We R Rare Patient, Carer and Family Steering Group
Did you know that rare conditions affect more than 3.5 million people across the UK? Or that two-thirds of rare conditions can cause chronic disability? What about the fact that most rare conditions do not yet have a treatment? We’re working to change that and improve the lives of people with rare conditions, of all ages.
To make this change a reality, we need to work in partnership with people who have personal experience of a rare condition – whether they have a rare condition themselves or a carer or family member. Their unique insights and perspectives will help us to ensure the work that we do is relevant, acceptable and meets the needs of people with rare conditions.
What is the We R Rare Patient, Carer and Family Steering Group?
In collaboration with the Manchester Biomedical Research Centre and Vocal, we launched the new ‘We R Rare Patient, Carer and Family Steering Group’ in February 2024 – our first meeting coincided with Rare Disease Day 2024!
The Steering Group is made up of 11 patients, carers and family members with direct experience of rare conditions across Manchester and North West England. Members use their experiences of rare conditions to:
- Shape the research, services, and support available to people living with rare conditions.
- Provide strategic advice to the Manchester Rare Conditions Centre and the Manchester Biomedical Research Centre.
- Influence the latest research projects for discovering, studying, and treating rare conditions.
- Raise awareness of rare conditions and the challenges faced by those living with them.
Members will soon be writing regular blogs to share updates on what they’ve been up to – watch this space to find out more soon!
Interested in getting involved and using your unique perspectives?
If you have personal experiences of rare conditions, we need your help to improve research and healthcare services and help patients in the future.
We currently have two ways for you to get involved:
- We’re looking to expand the membership of the We R Rare Steering Group to bring in a broader mix of experiences and ensure under-represented and under-served populations have their say.
- Join the Rare Conditions Network where you’ll find out about different opportunities to get involved across a variety of projects. Some may be one-off opportunities and others will be looking for longer-term involvement but it’s completely up to you how much you’d like to get involved.
If you have any questions or would like further information about getting involved, please get in touch with Sinduja (sinduja.manohar@mft.nhs.uk) and she’d be happy to help!